Fusion in my lower back without knowing. Waking up with all my joints hurting? Is this the onset?
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Hi guys,
28m here.
I had a CT scan in September for a stomach issue. The scan showed that I had some loading on the right side of my intestine but also showed that, without me knowing, my lower vertibrate is fused to my pelvis. I wasn't worried about it at all when it came up in the scan, it just explained a lack of mobility in my lower back that I blamed on being tall. The gastroenterologist did however write that it could be early AS and referred me to a rheum. Again, i wasn't worried at all. it wasn't causing any pain (I was more concerned about my stomach issues which had kept me from my usual heavy exercise routine for the previous five months.)
However, about 5 weeks before Christmas, I had some new issues with my eyes. And a week later, I had a burning pain in my right elbow. Over the next few days, it seemed to spread to all my joints. It seemed to fade away after I was up and about but it seems to be getting worse.
The burning is still present when I wake in most of my joints (knees, elbows, wrists, hands) and pain wise, it's been fairly constant and has settled in my knees. I can feel a burning/pinching in them most of the time and it feels worse at rest, or when I first start walking, or if i stay on my feet in one place too long. Though sometimes I find a position where I feel okay.
In the past few days, I've started to have an increase in pain in my back and neck and I can hear a crunching sound in my lower neck and jaw.
This morning, when I woke up, my knuckles felt a little warm and mildly stiff to accompany the burning in a lot of my joints.
I've been backwards and forwards to the GP so I'm biding my time between appointments at the minute (can't really rush things with the NHS, no matter how much you want to know what's going on). Due to an ongoing issue with neutropenia, I have a blood test next week that was requested by a haematologist, which i believe will look for a wide array of different things. That's my next milestone before my first rheumatology appointment in March. My other blood tests have come back clear so far. So I really don't know what's going on.
My question is, do my symptoms tie in with AS? Can AS cause the burning pain in all my joints? I can even feel it in my toes at times. I'm not sure about fibro as it seems to be confined to my joints and no muscle involvement.
Symptoms in total are:
Burning in seemingly all joints (dies down during the day and moves around quite a bit)
All over crepitus
Sharp pain in knees
Pain in neck and back seems to be present during the day now also.
Hair has been shedding a lot, inc eye-lashes etc
Additional:
Dry tongue (tongue feels sandy and if I sleep with my mouth open, it sticks to my teeth. No sign of yeast)
Gastro issues
It'd be greatly appreciated to hear if anyone has had any symptoms like this? The only thing that I have to go on at present is that "possible early AS" reference.
0 likes, 6 replies
rose0000 Jaydroid
Posted
For now hot presses ( can be bought in chemist) will help with the pain - rest - exercise and above all get a good physio to help prevent further fusing.
There is a range of AS treatments that you can try once you know for sure but these suggestions should help in the meantime.
ama38049 Jaydroid
Posted
Not sure how to answer. I had (and have) most of your symptoms (e.g., gastro) and some others (I think that you have enough to add more to the list), but I also consulted 4 leading rheumatologists (2 heads of the departments including, lots of wasted money) and 2 good neurologists and they all said that the burning sensation and pain in knees are not related to AS. It's hard to argue with someone who seems to know what they are talking about. It's harder to argue with your own body. If CT showed that you have AS, then you have it. It’s not the end of the world if you receive an early treatment. I hope that we will find the answers. I am certainly looking for some. Good luck with your appointment. Hope that you will feel better soon…
gillian17884 Jaydroid
Posted
TreatMeGently Jaydroid
Posted
Your at the same age as when my disease hit its peak - mine started at 17 but 28 was the worse - I am 50 this year.
I was aware that the knees and other joint could be involved but here are other form of arthritis like Psoriatic Arthritis that are more likely to affect he jaw than AS - then again the eye issues can be AS.
Personally I would start with unravelling the tummy issue with some experimental diet changes - most of the arthritis research points to gut imbalance and / or infection being involved.
Docs like to pigeonhole the diagnosis - but I think we are all slightly different.
PsA also has similar genetic basis with HLA-B27.
ama38049 Jaydroid
Posted
EMT929 Jaydroid
Posted